This is dementia. It's not just a memory problem.
What you read in this blog is purely my own personal experience in dealing with Lewy Body Dementia every day.

This is not meant to offer any medical or legal advise.
I have no professional training in care giving or experiences in formal writing.
I'm just a woman that loves her husband deeply and wants to provide him with the best quality of life he can and chooses to have.
My prayer though this is "Lord, What am I learning from this; how can I use it help someone else and to glorify You?"
If just one person finds comfort in this public blog. I will feel like it was a success.

Friday, January 24, 2014

Caregiver Respite

I'm stuck.
I'm so stuck, I don't really know how deeply stuck I am.
So this is my attempt to dig out.
And it might have to come in small shovel fulls.

Respite was a very welcomed and much needed time last Nov.
Several months prior I had made arrangements to do the thing we warn our children not to do.
Never travel anywhere unfamiliar alone.
Never meet anyone from on line, and especially never go off with them alone.

But I felt like my heart already knew several of the members of my on line support group and I was so excited for the opportunity to meet them, how could I not at least try?
So I saved my pennies and cleaned off my credit card (learned a seriously hard life lesson about those so I never keep more debt than I can take care of right away) and as part of the group was able to get an awesome deal on an all inclusive cruise. WOOT!
I had never been on one before so I was anxious, but mostly about what to wear.

I called and scheduled respite, and you can read about the intake here .

Are you back? Ok, good. You read quickly :)

So, respite didn't go so smoothly for Hubby and it it started out bumpy for me but I knew I had made the best arrangements I could for him and I kept my mind focused on what I needed, time to regroup my heart and mind. Eye's on the prize, keep moving forward.

I knew Hubby was in a safe environment. I knew he would get proper care, not the care I would have provided or the one on one attention I provide him, but proper care non the less. I knew he would have a Hospice aide Mon - Fri of both weeks. I knew he would have his meds, I had made arrangements for him to have the conveniences of home ie TV, bed trapeze bar, drawer full of candy, our children promised to pop in for a visit. All I could do, besides staying there with him, and really, what good would the respite have done me if I had?, was being done.
This was Hubby's time. Time to be able to get away from me and interact with others. Time to get a break from my stress and attitude that I was having a hard time keeping reigned in.

And then it was my time. My time to step out of the lewy body dementia world of confusion. A luxury I have even if it's for a few minutes hiding in the bathroom or another part of the house. Something Hubby can not do of his own free will, ever.

Feeling confident I had done all I could for Hubby I made my escape for precious time with Oldest Daughter and Youngest Daughter. They both took a day off work to play hooky with me. We went shopping and had lunch and played a lunch game called, Order for the other person. That was interesting and fun besides good food choices. Oh we laughed and it was so much fun to do that!

Packing for Hubby was easy. I had made and saved a list for reference. Packing for my time was it's own issue. I had no idea what to bring so I packed my closet, then eliminated and repacked, weighed the case and repacked again with more removal. As I had to mix and match outfits with the approval of my clothing inspector, Youngest Daughter I wondered if I would remember what went with what, so, with my phone I took pics of the outfits, shoes and accessories for easy reference LOL!! Hey, it worked.

My travel included air flight. I love to fly but it had been years since I had, so I had to learn a few things. One of those was check in. Apparently you can do it on line now. Tickets can be printed. Baggage check in can be done on line too. And they charge per bag?! Good thing I repacked because there is an over weight charge too.
One of the fun things is you even get to see what seat you are assigned. Don't like your seat?, move it, for a fee for some seats. So I looked at all my options and length of travel time on one of the flights and decided, I was worth an upgrade! So I upgraded myself to first class. That's right, I'm a first class caregiver so why not travel like one! YEAH! That and the fact that a seat change to a window and a baggage fee was almost what a first class seat would have cost, so I took it.

Now you're probably saying to yourself, This isn't about caregiving, why is she writing this?
Ahh but it IS about caregiving.
You see, caregiving isn't only about the quality care we just give our loved ones. It's about the quality care we give ourselves so we CAN give quality care to our carees. We, the caregivers deserve to be treated with a little pampering every now and then. The day in and day out of caregiving can wear down a mind and body. Lewy Body dementia feels especially wearing so it felt good to have a me moment. Someone took care of me, offered me a beverage, a snack and pillow, whatever was available to make my trip more comfortable and convenient. Don't we do the same thing for our loved ones?

As I stepped off the plane, priority exiting, it was my time. Look out world, First Class Caregiver coming through!


  1. Kathy, you inspire me. I have been a caregiver all of my adult life, yet you still teach me <3 Crissy

  2. Good for you! You ARE worth first class.

  3. I applied for my passport last Tuesday. I am going to take your advice.

    Love your blog, so informative and pertinent information for me.

  4. Great, Kathy! My sister-in-law took me on a cruise for respite and it was great.

  5. You DESERVE FIrst class of course!!! Very important to care for the caregiver. YES!!!!

  6. Kathy -
    I just sat down and read through your entire blog in one sitting. I just want you to know how incredibly valuable your journal is. I lost my mom in 2012 after a three year battle with LBD. My father suffered through all of the caregiving heartache you have described. I wish I had known about your journal during those years. I am shocked (and a bit enraged) that your blog provides far more LBD information than we ever received from her neurologist. It would have helped my dad so much to read how you have handled your husband's cognitive decline, delusions, personality changes, etc. while he was going through the very same thing with my mom. You are providing an invaluable service for every family dealing with this horrible disease. Every neurology clinic should be alerting LBD families to your blog. Thank you and God bless.

  7. Cariol Evans CatalanoJune 27, 2016 at 5:03 PM

    Thank you so much, it has been one month since hubby died, and reading this helped me see, I too did everything possible to get him to a peaceful place and with Hospice help we did.He went peacefully.He went one way, I went the other. He was free to fly. I walked slowly, only lately picking up my pace. Thank you it was an amazing read.

    1. Hi Cariol,
      Thank you for taking the time to read about our journey.
      If you're interested I did a blog on my grief experience at
      I did it more as a way to sort my own feelings and experiences but it's also for anyone that would like to know that their feelings are shared and understood . Your new journey begins. Treat yourself gently and move at your own pace.


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